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How to untrap a methyl trap

Messages
31
Hi,

I've made a few posts on here about my problems with b-vitamins, subsequent MTHFR dx, and problems with methyl bs. I'm not sure but I think I may have developed a methyl trap situation and I'm wondering how I can get out of it…

So I started methyl b12 and methyl folate back in mid Novemrber… 1000mcg of both… did not do well… particularly with the methyl b12 (may have COMT) cut the doses in half and by early January stopped them all together…. Then started to have symptoms of periodic agitation, tightness in chest, anxiety. This would come and go…

Some updated labs showed a jump in my homocysteine from 8.0 to 9.2 in just over a month (my homocysteine levels are usually around 8) . My folate test came back pretty high 922. Even my b6 came back at 15 with 21 being top range… now I have not been feeling well since November and lost almost 20 lbs… not eating a lot of folate or anything else for that matter…

I'm wondering if I have created a built up of folate that my body can't get rid of…

problem is I don't do well with methyl b12 and I tried Hydroxy b12 twice and felt like I was having a heart attack both times… blood pressure went sky high… and I'm already taking PP meds… I worried I may be damaging my cardiovascular system. I know I can take adeno b12 but that goes down a completely different pathway. Would taking the adeno b12 help break the methyl trap just by getting my b12 up or does it need to be a methyl version… ?

If not
what happens to pooled folate… does it eventually dissipate or just continue to build up ? I'm even afraid to do my green smoothies for fear to causing my folate to go even higher


Anyone have any suggests on how I can reduce my pooled folate if that is what is going on
 

adreno

PR activist
Messages
4,841
I would start with low dose methyl b12, say 125mcg, and then slowly build from there. Adeno doesn't work for methylation.
 
Messages
31
Yeah, I thought about doing the… But he MTHFR support folks think I have COMT (my still waiting for my 23andme test to come back) and told me not to take anymore methy b12 … they also told me to hold off because of possible CBS pathway stuff...

Oh my Histamine level came back just under top range as well… so I'm wondering if that is related… I'm not even sure if it is methyl trapping… but I don't know why my homocysteine would have jumped up like that in a month

I feel like I'm damned if I do damned if I don't… but like I said… I have some blood pressure issues… so that makes me a bit more cautious
 

adreno

PR activist
Messages
4,841
Having COMT doesn't mean you don't need b12, you just need lower doses. If you have methyl trap the only way out is to take b12. Maybe adding some b3 will help you to tolerate the methyl groups better.
 
Messages
31
Thanks !!! I've …used niacin before to help with some of those symptoms. I've had two really bad episodes with synthetic b-vitamins since November (never had that before) So I'm a bit leary of vitamins in general right now… that is why I was wondering if the built up methyl folate eventually dissipated.

I did some reading and there does seem to be a relationship between elevated folate and histamine
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks !!! I've …used niacin before to help with some of those symptoms. I've had two really bad episodes with synthetic b-vitamins since November (never had that before) So I'm a bit leary of vitamins in general right now… that is why I was wondering if the built up methyl folate eventually dissipated.

I did some reading and there does seem to be a relationship between elevated folate and histamine

Many people have a response to MeCbl and Methylfolate of low potassium (increased BP and other things) and donut hole paradoxical folate deficiency where healing gets going in some triage layers and worsened deficiency symptoms in other triage layers. Common startup symptoms are listed below in categories.

Version 1.2 12/08/2013

Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


Group 2a - Both

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


Group 2b – Either or both

Headache, Increased malaise, Fatigue



Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.


Old symptoms returning

Edema

Angular Cheilitis, Canker sores,

Skin rashes, increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


Longer term, very serious

Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily




Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
 
Messages
31
Many people have a response to MeCbl and Methylfolate of low potassium (increased BP and other things) and donut hole paradoxical folate deficiency where healing gets going in some triage layers and worsened deficiency symptoms in other triage layers. Common startup symptoms are listed below in categories.

Version 1.2 12/08/2013

Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


Group 2a - Both

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


Group 2b – Either or both

Headache, Increased malaise, Fatigue



Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.


Old symptoms returning

Edema

Angular Cheilitis, Canker sores,

Skin rashes, increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


Longer term, very serious

Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily




Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.


Freddd,

Do you have an suggestions ?
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
I would first be sure to stay away from any whole foods containing any amounts of folic acid this is the biggest methyl trap issue for most. Also obviously avoid supplemental form of folic acid, and no NAC, Whey, or glutathione supplements.. Keep potassium intake high.. The blood tests sounds like a result of paradoxical folate deficiency.. Basically something pushed the folate out of the cellular methylation and production which raised blood serum folate levels but with paradoxical low folate on a cellular level.

I don't really follow the MTHFR site and also kind of doubt the accuracy of their testing at times.. I know Yasko has had great success, but there are certain things on some of those sites that seem contridicted or based in theories without any hard actual proof of effectiveness..

One example was this article http://mthfr.net/methylfolate-side-effects/2012/03/01/

It describes methyl folate causing an inflammatory response and to start slowly and back off if there is inflammation.. However this in practice has related more to paradoxical folate deficiency then an inflammation response to folate alone.. This happens when someone introduces a very low dose of folate along side the methyl b12 and you get donut hole folate deficiency which sometimes mostly needs to be handled by high dose folate and b12.

Is there any synthetic vitamins you are taking that may be triggering a reaction? Or maybe something in your diet?

If it were me I would adress it by getting high amounts of folate and methyl b12 in the system, possibly by injections and then adressing any methyl traps that may have happened through diet or additional supplementation.. I am not you though, and do not have the same medical history.. I would definitely suggest just being as safe as possible with whatever you choose to do..

Methyl b12 has no real known upper limit of toxicity though, and methyl folate can be taken upwards of 30,000mg a day with no toxicity, some even take 50,000 a day for severe depression with no serious issues..

What CAN do harm is methyl trap and low potassium as a result of improper methylation, this is why I suggest looking into possible methyl traps and being sure potassium levels are well, though do it through a hair and mineral test not blood, a blood test will not show deficiency happening at a cellular level, much like serum blood tests do not show cellular levels of folate.
 
Messages
31
I would first be sure to stay away from any whole foods containing any amounts of folic acid this is the biggest methyl trap issue for most. Also obviously avoid supplemental form of folic acid, and no NAC, Whey, or glutathione supplements.. Keep potassium intake high.. The blood tests sounds like a result of paradoxical folate deficiency.. Basically something pushed the folate out of the cellular methylation and production which raised blood serum folate levels but with paradoxical low folate on a cellular level.

I don't really follow the MTHFR site and also kind of doubt the accuracy of their testing at times.. I know Yasko has had great success, but there are certain things on some of those sites that seem contridicted or based in theories without any hard actual proof of effectiveness..

One example was this article http://mthfr.net/methylfolate-side-effects/2012/03/01/

It describes methyl folate causing an inflammatory response and to start slowly and back off if there is inflammation.. However this in practice has related more to paradoxical folate deficiency then an inflammation response to folate alone.. This happens when someone introduces a very low dose of folate along side the methyl b12 and you get donut hole folate deficiency which sometimes mostly needs to be handled by high dose folate and b12.

Is there any synthetic vitamins you are taking that may be triggering a reaction? Or maybe something in your diet?

If it were me I would adress it by getting high amounts of folate and methyl b12 in the system, possibly by injections and then adressing any methyl traps that may have happened through diet or additional supplementation.. I am not you though, and do not have the same medical history.. I would definitely suggest just being as safe as possible with whatever you choose to do..

Methyl b12 has no real known upper limit of toxicity though, and methyl folate can be taken upwards of 30,000mg a day with no toxicity, some even take 50,000 a day for severe depression with no serious issues..

What CAN do harm is methyl trap and low potassium as a result of improper methylation, this is why I suggest looking into possible methyl traps and being sure potassium levels are well, though do it through a hair and mineral test not blood, a blood test will not show deficiency happening at a cellular level, much like serum blood tests do not show cellular levels of folate.


Hi Thanks for responding

My potassium is 4.0 (3.5-5.3). With regards to the MTHFR folks and Dr. Lynch…. I an tell you from personal experience… I get those symptoms with the methyl… severe agitation and anxiety… even the hydroxy… I took a half tablet last week and within a couple hours I felt like I was having a heart attack… I'm waiting for my 23andme to come back… they are betting I have COMT…. which would also fit with my estrogen issues…

To recap from some of my other posts… this all started back in early November when my hormone doc put me on an estrogen reduce powder called Estrium… It was loaded with B vitamins… what my doc did not realize was that I was already taking a b12, B complex, and multi-vitamin…. I started to have some kind of reaction… darted getting a tingling/prickly heat sensation and had some kind of inflammatory swelling… aggravated my varicose vein in my leg… swelled up…. This eventually passed after a few weeks… I was then Dx with MTHFR and paced on methyl b12 an methyl folate…

I did not do well with the methyl b-12… got really agitated, anxious. I stopped the Methyls in early January…. I made the mistake of taking ONE multivitamin and ate two fortified protein bars… had another… more acute attack… neuropathy like pain all over my body, swelling, agitation/anxiety and shaking…

I did the lab work after that…

Other than my high estrogen… and some other low male hormone levels I did not have any health issues prior to this (other than high blood pressure which is generally controlled meds)

I feel terrible and it all started when I started that Estrium and the Methyl Bs
 
Last edited:

Sea

Senior Member
Messages
1,286
Location
NSW Australia
@DKnickerbocker what brand of Methylcobalamin do you use?

I am homozygous for COMT and heterozygous for CBS. I had problems with agitation with synthetic B12 but have not had any issues with Enzymatic Therapy Methylcobalamin sublinguals. (They're actually sold as chewable but most of us here use them as sublinguals) I started with 0.5mg and currently take 2mg/day and have done so for close to six months now.
 

Crux

Senior Member
Messages
1,441
Location
USA
Hi;

To lower folate, I would drink green tea, and especially minimize fermented foods and drinks for a time.

Fermentation increases B vitamins in the foods, and also the gut. ( We can have too many beneficial bacteria that can cause serious problems.)

Also, starches can feed beneficial bacteria, and increase the overgrowth. ( I don't think that low carb is good either...just have a moderate amount.)

Here's an article that lists some of the beneficial bacteria that increase folate. This can be good for most people, unless they make or have too much.

http://www.formatex.org/microbio/pdf/Pages329-339.pdf
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Hi Thanks for responding

My potassium is 4.0 (3.5-5.3). With regards to the MTHFR folks and Dr. Lynch…. I an tell you from personal experience… I get those symptoms with the methyl… severe agitation and anxiety… even the hydroxy… I took a half tablet last week and within a couple hours I felt like I was having a heart attack… I'm waiting for my 23andme to come back… they are betting I have COMT…. which would also fit with my estrogen issues…

To recap from some of my other posts… this all started back in early November when my hormone doc put me on an estrogen reduce powder called Estrium… It was loaded with B vitamins… what my doc did not realize was that I was already taking a b12, B complex, and multi-vitamin…. I started to have some kind of reaction… darted getting a tingling/prickly heat sensation and had some kind of inflammatory swelling… aggravated my varicose vein in my leg… swelled up…. This eventually passed after a few weeks… I was then Dx with MTHFR and paced on methyl b12 an methyl folate…

I did not do well with the methyl b-12… got really agitated, anxious. I stopped the Methyls in early January…. I made the mistake of taking ONE multivitamin and ate two fortified protein bars… had another… more acute attack… neuropathy like pain all over my body, swelling, agitation/anxiety and shaking…

I did the lab work after that…

Other than my high estrogen… and some other low male hormone levels I did not have any health issues prior to this (other than high blood pressure which is generally controlled meds)

I feel terrible and it all started when I started that Estrium and the Methyl Bs

Whoah okay now that makes sense... generally even just one b complex vitamin already has WAY too much B vitamins at levels that can cause issues just like you mentioned! The only B vitamins that has no real upper toxicity range is methyl b12, folate also can be taken in pretty high doses without toxicity, though this doesn't mean it SHOULD in all cases. Cyano b12 is also toxic.. When people have acute reactions to really high b vitamin levels
those usually resolve once the supplementation is stopped. There is no real reports of people having long term issues from having certain elevated b levels for a short while.. Usually the case is people develop issues after using b vitamins at levels way over the RDV range eventually get weird symptoms, drop the vitamins and then get stable once its all urinated out..

I wouldn't fret having a few times of folic acid, its okay if it happened once or twice, just obviously always avoid it best you can.. The issues are when you are taking in daily folic acid while on methylation protocol. The methyl trap it created would drop when the folic acid is dropped, as well as recovering the other methyl b and folate levels..

I had accidentally eaten folic acid fortified things a few times and did not notice too much myself though it definitely caused a partial trap, as well as a glutathione producing pre cursor which triggered other stuff until I stopped it..
I also get periods of agitation, shaking, and anxiety, folate deficiency can cause all of this for sure, as well as being a side effect of methylation in general.. It was hard to say where all my issues stem from most the time though, I also have severe neuropathic pain, twitches, and weird things but this all started from my lyme disease not the methylation protocol... The period of folate deficiency which caused inflammation definitely flared symptoms though.

I don't think there would be any remaining reaction to methyl b12 in place still though, it would seem more like methyl trap issues like your OP suggested.. The Estrium could have done it though... I think whatever is going on though is very fixable and definitely not going to affect you long term...

I do not know enough about the suggestions in other methylation protocols so I would only be able to give you the treatment and methyl traps that and corrections based on Freds protocol.

Did you also by chance check the link I sent you on my previous post? A lot of what you mentioned is on there regarding folate, though in my opinion the approach is backwards. On MTHFR they call it folate symptoms, but in experience again seems to point more towards paradoxical folate deficiency. The Neuropathic pains do occur with excessive levels of b vitamins besides b12, and also happens with in cases of b12 deficiency. Sometimes when people start adding in b12 after being deficient for a long time they also get a huge rise in neuro symptoms from nerves waking up again.. Did you ever get your b12 levels tested before all of this stuff? Perhaps at the time you had your folate levels drawn?

Your issues also stem highly with lyme like I have but it doesn't seem to be the case with you, diabetics can have similar things happen without adequete insulin, as well as symptoms of hypo and hyper kalemia.

If you do get potassium deficiency from Fred's protocol it would probably only be visible on a mineral test using hair, because of cellular deficiency while having low normal serum blood potassium levels..

On note of your estrogen imbalance has this been chronic or a more recent issue? Do you eat a lot of soy? Or use plastic bottles to drink and heat food with? Use a lot of liquid hand soap? There are a lot of environmental causes that can easily be fixed which can cause high estrogen, low test, and thyroid issues for a whole bunch of people..

Also do you have M.E. or Chronic Fatigue Syndrome?
 
Messages
31
@DKnickerbocker what brand of Methylcobalamin do you use?

I am homozygous for COMT and heterozygous for CBS. I had problems with agitation with synthetic B12 but have not had any issues with Enzymatic Therapy Methylcobalamin sublinguals. (They're actually sold as chewable but most of us here use them as sublinguals) I started with 0.5mg and currently take 2mg/day and have done so for close to six months now.[/quote
@DKnickerbocker what brand of Methylcobalamin do you use?

I am homozygous for COMT and heterozygous for CBS. I had problems with agitation with synthetic B12 but have not had any issues with Enzymatic Therapy Methylcobalamin sublinguals. (They're actually sold as chewable but most of us here use them as sublinguals) I started with 0.5mg and currently take 2mg/day and have done so for close to six months now.

I'm not sure of the brand at the moment… I got it from my doctors office… it was a sublingual….

All I can go on is my reaction… even with the hydroxy I took initially a half and then on another occasion a quarter dose…. So I'm not sure what is going on but my blood pressure when through the roof for a few days….even with my bp meds,,,, something is off with my system !
 
Messages
31
Hi;

To lower folate, I would drink green tea, and especially minimize fermented foods and drinks for a time.

Fermentation increases B vitamins in the foods, and also the gut. ( We can have too many beneficial bacteria that can cause serious problems.)

Also, starches can feed beneficial bacteria, and increase the overgrowth. ( I don't think that low carb is good either...just have a moderate amount.)

Here's an article that lists some of the beneficial bacteria that increase folate. This can be good for most people, unless they make or have too much.

http://www.formatex.org/microbio/pdf/Pages329-339.pdf
I'll look into the green tea… I already eat a low carb diet… intact I've felt so bad… haven't been eating much of anything lately… I've dropped 18 lb in the past month and a half
 
Messages
31
Whoah okay now that makes sense... generally even just one b complex vitamin already has WAY too much B vitamins at levels that can cause issues just like you mentioned! The only B vitamins that has no real upper toxicity range is methyl b12, folate also can be taken in pretty high doses without toxicity, though this doesn't mean it SHOULD in all cases. Cyano b12 is also toxic.. When people have acute reactions to really high b vitamin levels
those usually resolve once the supplementation is stopped. There is no real reports of people having long term issues from having certain elevated b levels for a short while.. Usually the case is people develop issues after using b vitamins at levels way over the RDV range eventually get weird symptoms, drop the vitamins and then get stable once its all urinated out..

I wouldn't fret having a few times of folic acid, its okay if it happened once or twice, just obviously always avoid it best you can.. The issues are when you are taking in daily folic acid while on methylation protocol. The methyl trap it created would drop when the folic acid is dropped, as well as recovering the other methyl b and folate levels..

I had accidentally eaten folic acid fortified things a few times and did not notice too much myself though it definitely caused a partial trap, as well as a glutathione producing pre cursor which triggered other stuff until I stopped it..
I also get periods of agitation, shaking, and anxiety, folate deficiency can cause all of this for sure, as well as being a side effect of methylation in general.. It was hard to say where all my issues stem from most the time though, I also have severe neuropathic pain, twitches, and weird things but this all started from my lyme disease not the methylation protocol... The period of folate deficiency which caused inflammation definitely flared symptoms though.

I don't think there would be any remaining reaction to methyl b12 in place still though, it would seem more like methyl trap issues like your OP suggested.. The Estrium could have done it though... I think whatever is going on though is very fixable and definitely not going to affect you long term...

I do not know enough about the suggestions in other methylation protocols so I would only be able to give you the treatment and methyl traps that and corrections based on Freds protocol.

Did you also by chance check the link I sent you on my previous post? A lot of what you mentioned is on there regarding folate, though in my opinion the approach is backwards. On MTHFR they call it folate symptoms, but in experience again seems to point more towards paradoxical folate deficiency. The Neuropathic pains do occur with excessive levels of b vitamins besides b12, and also happens with in cases of b12 deficiency. Sometimes when people start adding in b12 after being deficient for a long time they also get a huge rise in neuro symptoms from nerves waking up again.. Did you ever get your b12 levels tested before all of this stuff? Perhaps at the time you had your folate levels drawn?

Your issues also stem highly with lyme like I have but it doesn't seem to be the case with you, diabetics can have similar things happen without adequete insulin, as well as symptoms of hypo and hyper kalemia.

If you do get potassium deficiency from Fred's protocol it would probably only be visible on a mineral test using hair, because of cellular deficiency while having low normal serum blood potassium levels..

On note of your estrogen imbalance has this been chronic or a more recent issue? Do you eat a lot of soy? Or use plastic bottles to drink and heat food with? Use a lot of liquid hand soap? There are a lot of environmental causes that can easily be fixed which can cause high estrogen, low test, and thyroid issues for a whole bunch of people..

Also do you have M.E. or Chronic Fatigue Syndrome?



No CFS or M.E. … Only reason I even got tested for the MTHFR was because of the reaction I had to th Estrium.
Infact I had taken regular synthetic b vitamins for years and never had any issues… it was not until I added that Estrium… that it sent me over the edge… got toxic or triggered something…. in addition to the swelling and tingling I had a sudden(I mean overnight… I could feel it happening ) weight gain in certain parts of my body… it happened during both attacks… some kind of inflammatory reaction… I don't know what the mechanism was for it… gut, liver, ect .. but something very acute happened….

The tingling and swelling are pretty much gone… and that seemed to come from those two acute reactions to the synthetic Bs… not the methyls…. What I got from the methyls was agitation/anxiety….but what I'm left with since taking a half dose and a couple days later quarter dose (250mcg) of hydroxy b12 is chest pressure, and elevated BP.

Estrogeni s episodic… used to really spike when I exercised a lot… I put muscle on easily and the thought was I was amomatazing my T to E…. when not exercising my levels tend to be normal…. sometimes my total E goes above top range… I take arimidex so that keeps it in checks… but the thinking now is that the MTHFR and possibly COMT (if I have it) are the source of the estrogen issues
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Interesting stuff man, well it definitely sounds like the combo reaction of excessive b vitamins and the Estrium did do something to your system, at least temporarily... Wow really? So you gain muscle easy and have even higher estrogen while exercising? how are the strength gains? The only other reason I would figure for that is stress and cortisol which can naturally bring T levels down and estrogen up, though you would not be GAINING muscle and getting stronger like that lol...

The reaction you describe to both methyl and Hydro just sound like cellular hyper excitibilty though, don't know the exact term but like 90% of people get the same side effects to various degrees.. It usually fades when your body gets more used to it, or for being on it for a bit longer of a period.. It sounds like a physical manifestation of anxiety as well, which could be activated because of the b12... I mean anxiety in its most basic form is just sensitized nerves.. So maybe the b12 is making the nerves sensitize and highly reactive because of the previous toxicity? Or just because its a common reaction we all get lol, I got the same exact things and just let the symptoms come and go while my body got accumulated.. It doesn't happen nearly as much anymore for me.

Well sounds like you are already on the right track and taking the right steps to fix whatever it is that is going on.. once you correct the methylation issues sure this will clear right up!
 
Messages
31
Interesting stuff man, well it definitely sounds like the combo reaction of excessive b vitamins and the Estrium did do something to your system, at least temporarily... Wow really? So you gain muscle easy and have even higher estrogen while exercising? how are the strength gains? The only other reason I would figure for that is stress and cortisol which can naturally bring T levels down and estrogen up, though you would not be GAINING muscle and getting stronger like that lol...

The reaction you describe to both methyl and Hydro just sound like cellular hyper excitibilty though, don't know the exact term but like 90% of people get the same side effects to various degrees.. It usually fades when your body gets more used to it, or for being on it for a bit longer of a period.. It sounds like a physical manifestation of anxiety as well, which could be activated because of the b12... I mean anxiety in its most basic form is just sensitized nerves.. So maybe the b12 is making the nerves sensitize and highly reactive because of the previous toxicity? Or just because its a common reaction we all get lol, I got the same exact things and just let the symptoms come and go while my body got accumulated.. It doesn't happen nearly as much anymore for me.

Well sounds like you are already on the right track and taking the right steps to fix whatever it is that is going on.. once you correct the methylation issues sure this will clear right up!

Yeah if I don't have a heart attack or stroke first… my doc took my BP the other day and my diastolic was 105… and m heart rate was 115…. those came back down a bit but it has remained high… but with 2 copies o C677T MTHFR and BP that is not good for my heart !
 

Freddd

Senior Member
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5,184
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No CFS or M.E. … Only reason I even got tested for the MTHFR was because of the reaction I had to th Estrium.
Infact I had taken regular synthetic b vitamins for years and never had any issues… it was not until I added that Estrium… that it sent me over the edge… got toxic or triggered something…. in addition to the swelling and tingling I had a sudden(I mean overnight… I could feel it happening ) weight gain in certain parts of my body… it happened during both attacks… some kind of inflammatory reaction… I don't know what the mechanism was for it… gut, liver, ect .. but something very acute happened….

The tingling and swelling are pretty much gone… and that seemed to come from those two acute reactions to the synthetic Bs… not the methyls…. What I got from the methyls was agitation/anxiety….but what I'm left with since taking a half dose and a couple days later quarter dose (250mcg) of hydroxy b12 is chest pressure, and elevated BP.

Estrogeni s episodic… used to really spike when I exercised a lot… I put muscle on easily and the thought was I was amomatazing my T to E…. when not exercising my levels tend to be normal…. sometimes my total E goes above top range… I take arimidex so that keeps it in checks… but the thinking now is that the MTHFR and possibly COMT (if I have it) are the source of the estrogen issues

HK Dknickerbocker,

There is a substantial subset of persons here who have a CNS/CSF MeCbl, l-methylfolate, AdoCbl and/or carnitine deficiency causing damage in the limbic system of the brain that has the characteristic of increased anxiety, anger, rage, agitation, severe depression and so on related to a hyper response to any or all of the deadlock quartet as the methylation and ATP generation start working. . Methylfolate deficiency can cause immediate onset of edema and gaining several pounds per day. I am fully recovered from Congestive Heart Failure after 20 years of it. If you were to look at the list of symptoms and indicate all that you have and have had it could help indicate what is going on.
 
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HK Dknickerbocker,

There is a substantial subset of persons here who have a CNS/CSF MeCbl, l-methylfolate, AdoCbl and/or carnitine deficiency causing damage in the limbic system of the brain that has the characteristic of increased anxiety, anger, rage, agitation, severe depression and so on related to a hyper response to any or all of the deadlock quartet as the methylation and ATP generation start working. . Methylfolate deficiency can cause immediate onset of edema and gaining several pounds per day. I am fully recovered from Congestive Heart Failure after 20 years of it. If you were to look at the list of symptoms and indicate all that you have and have had it could help indicate what is going on.


Hi Freddd,

Well again… I had no ME/CFS symptoms prior to November… Only symptoms I was dealing with were elevated estrogen at times…. weight gain over the past several years with an inability to lose any weight despite eating a lower processed carb/paleo style diet and regular exercise… In fact I was quite active. As my weight had gone up (I've put on approx 55 lbs over the past several years) I started getting high blood pressure and some cardiac symptoms… although the cardiologists can't find anything. I've got some very mind abnormal EKG reading… slight bundle ranch changes that still lands we with a normal result

After taking the Estrium..cmbined with the synthetic Bs I was already on…. I immediately started to have a pins and needles/prickley heat sensation all over my body…. this built up over a couple of says…. then all of a sudden the swelling and fat gain happened… left leg in particular really swelled up.. after going to a vascular doc hey determined I've got a couple of not so good valves in there and varicose veins… However they said something very acute must have happened to start that level of swelling… some kind of inflammatory reaction that aggravated the vessels.

In addition to that I start to have "FAT" gain in odd parts of my body… upper arms, armpit area… not typical places guys gain weight… but never had weight gain there before even with the high estrogen. Thing is it was a sudden onset… As I said previously I could feel it happening… I know that sounds crazy….

After a couple of weeks I stopped the estrium and synthetic Bs…. in the meantime I got labs results back from quest indicating 2 copies of the C77t MTHFR dx. My doc then put me on the basic protocol of Methyl b12 ad folate. At this point it is Mid November.

I took 1000mcg of each… within a day I was getting a headache.. .so I cut it with Niacin and that helped… But then I got hit with agitation feelings…. never had that before…. so we cut my dosage in half of each… I think I may have dropped the methyl b12 down to 250mcg and the Methyl folate to 500 mcg. My original tingling and swelling were subsiding at this point. But I just didn't feel right… hard to describe…. just off .

By Jaunary I decided to stop the Methyls altogether…. After that I noticed I was getting a pins and needles burning sensation when I was sitting i the car for more than a half an hour… onl in the back of my legs and butt I was also getting hit with periodic waves of that same agitation and anxiety… out of the blue….every couple of days...

about 3 weeks ago I made the dumb decision to take a multi-vitamin… figured I might be missing some other nutrients… and I ate 2 fortified protein bars over a 2 day period(I used to eat protein bars all the time with no problem)

I immediately felt the tingling sensation come back… Also got hit with another episode of the sudden fat/swelling in those same areas I also got hit wit the worse agitation and anxiety I had had thus far… I just laid on the sofa and shook like I had the flu. The next morning I was scheduled to do blood work… I still felt bad… so bad I went to he ER later that day… still had the pins an needles

By saturday night I was hit with a sudden onset of yellow burning diarrhea…. I also felt acidy… my skin burned… even my tears were burning by face… felt like a chemical burn….

Over the next few days the burning got worse all over my body… I took metamucil to help with the diarrhea (I read that somewhere) It not only helped but I noticed it took away my burning sensation in my body temporarily… I thought maybe something was going on with my gut…

my labs came back with the results I've already mentioned in the first entry at the top of the page… Ammonia also came back a bit elevated… 63 (47 is cut off)

I had been reading about methyl trapping and thought that may be going on… I had some hydroxy b12 (which I had never taken before) I took a half dose 500mcg in the early afternoon and by evening I felt I was having a heart attack.

The acute feelings wore off after a few hours bu I felt weak/drained after that… I did notice however that my burning was much improved though… a couple days later I thought I'd try it again but at a even lower dose… I took a quarter of a tablet… I guess about 250 mcg…. same thing happened… less cute onset but lasted longer…

On othner thing... I want to emphasize that the Methyls have not caused any swelling, weight gain, ect... only the agitation, anxiet and increases in blood pressure... The times I've had the swelling, ademna ,, and weight gain were after the epsisode with the estrium and with the multi-vitamin and protein bars... which leads to me believe there may be a problem with the B vitamins building up in my system... I would have though that any build up of those synthetics would have dissapated since early November....

So that is pretty much my whole story … any insight would be appreciated… my 23andme should be back in a few weeks.
 
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